Apply the MyTransition App In Transition An app-based Transition Toolkit targeting youth with chronic health conditions: A randomized control trial as a foundation to improve healthcare transitions and outcomes The ApplyIT Study Apply the MyTransition App In Transition Dr. Jan Willem Gorter & Nadilein Mahlberg, MSc OCHSU/HAHSO Transition Stakeholder Alliance Meeting June 2, 2017

The ApplyIT Study Team Multidisciplinary group from McMaster University and Hamilton Health Sciences, and an extension of previous successful collaborations in transition research. Co-PIs: Drs. Jan Willem Gorter & Christina Grant Co-Applicants: Drs. Lehana Thabane (Statistics), Steve Arora (Nephrology), Tapas Mondal (Cardiology), Andrew Don Wauchope (Lipids), Zubin Punthakee (Diabetes), Gabriel Ronen (Neurology) and Vicky Breakey (HaemOnc) MCH Quality Improvement Leads: Lisa Skradski & Tracy Akitt Collaborator: Khush Amaria Youth Collaborators: Julia Hanes & Nini Nguyen

The ApplyIT Study Pilot RCT

Research Purpose Responds to the need for a systematically well-designed research approach to developing evidence-based transition tools Tools that can be: Affordable Easily implemented in healthcare systems Applicable to the majority of youth with chronic health conditions

Research Question Objectives: To collect information to design a large multi-centre RCT to assess implementation of the MyTransition app To assess the feasibility and potential effect of the MyTransition app-based transition toolkit for improving health of youth, healthcare transition experience, and achievement of health and life goals

Design Pilot RCT informed by patient and family stakeholders “I believe that every single 17 year old has the right to have a successful transition to adult care because it is such a vulnerable and essential period in their life. I truly believe that the project will be a key player in evaluating the effectiveness of a successful transition and ultimately leading to better health outcomes. This project will help to spread awareness of the importance of transitions to health care professionals so it is made a priority when youth enter that stage in their life”. (From Letter of Support by Nini Nguyen, Youth Collaborator)

Outcomes Primary Outcome: Feasibility Completion rate of 90% Engagement of patients, parents, and HCPs Integration of the intervention in healthcare systems

Outcomes Secondary Outcomes Assess potential effect of an app-based transition toolkit for improving: Health of youth (Quality of Life) Short-Form Six-Dimension (SF-6D) Healthcare transition experience Client satisfaction questionnaire, qualitative interviews Achievement of health and life goals Canadian Occupational Performance Measure (COPM)

Sample 100 youth (50 in each arm) between the ages of 14-18 with a chronic health condition, who attend a participating clinic at MCH Must be able to utilize the intervention tool as well as read and understand English Must be independent in areas of daily functioning, self- care and/or communication

Sampling Convenience sampling Draw sample from 8 different clinics with MCH: Nephrology Cardiology Lipids Diabetes Neurology HaemOnc Developmental Pediatrics Adolescent Medicine

Methods Participants will be screened by affiliated clinic and potential participants will be approached by RC Participants will sign consent and complete baseline visit Randomized into intervention or control group Complete 3- and 6-month follow-up visits

Intervention Provided link to download the MyTransition app RC will review with participants and parents how to use the app in interactions during and outside of clinic visits for condition management Receive monthly reminder messages from RC to promote the use of the app in interactions with HCPs at all clinic visits Review of transition goals set by the participant with participant and parent

Measures Demographic Common Data Elements: detailed demographic information and eHealth literacy TRANSITION-Q: transition readiness/self-management ability scale Short-Form Six Dimension: describes and values individuals’ health Client Satisfaction Questionnaire: measures satisfaction with health and human services received by individuals and families Canadian Occupational Performance Measure: captures a client’s self-perception of performance and satisfaction in everyday living, over time

Qualitative Interviews Will qualitatively explore experiences and perceptions of youth, parents, and HCPs about transition to adult healthcare Purposefully sample 10 youth from the intervention group, along with 10 each of their parents and HCPs Triangulation of sources Individual interviews

Timeline Year 1 Create and finalize all study documents Obtain ethics approval Complete participant recruitment and begin follow-up visits Conduct qualitative interviews Start qualitative analysis

Timeline Year 2 Complete participant follow-up (3- and 6-month visits) Complete qualitative analysis Customize app based on feedback Hold stakeholder alliance meeting Start and complete quantitative analysis Manuscript preparation and submission Finalize plan for multi-centre RCT

Expansion of the ApplyIT Study Multi-Centre RCT

Multi-Centre RCT Expand to hospitals and organizations within Ontario TRANSITION Research network (7 sites) Possible funding agencies PSI CIHR

Group Discussion How would you see this study being rolled out within your clinic/organization? What are some points we need to consider moving forward? Additional comments/questions??

with a focus on Intervention Studies MOVING FORWARD… with a focus on Intervention Studies Dr. Jan Willem Gorter OCHSU/HAHSO Transition Stakeholder Alliance Meeting June 2, 2017

Program of Transition Research De 22 Jan 16 17 18 19 20 21 Transition Q OCHSU HAHSO PSI CHILD ‐ BRIGHT Kids Brain Health OBI 2014 2017 2019 2018 2020 Potential to renew for 5 more year s 2016 2021 2013 years Foundation Grant App?? Chronic Health Conditions Brain Based Disorders

Transition Research Network with Stakeholder Involvement

Roles for Youth and Families Family Researchers: Parents/youth that are interested in partnering on individual research teams Family Collaborators: Review & provide feedback on research proposals, grant applications, KT products, etc. Family Communicators: Participate in PPR/Youth Facebook Groups, be a knowledge broker in the community - inform people about Transition research & activities (e.g., webinars, workshops)

Establishing Stakeholder Alliance Who? What? When? Where? Why?

Thank-Q!